Has anyone with Hashimoto or any other autoimmu... - Thyroid UK

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Has anyone with Hashimoto or any other autoimmune condition tried low dose naltrexone ( NDL) to regulate autoimmune response?

sasha_nico profile image
14 Replies

I have multiple autoimmune diseases, such as Hashimoto, autoimmune gastritis and Reynolds. The list is growing.

I am already on clean diet and manage my stress as much as I can and need to try something more than that.

I have read the LDN research and keen to try.

I understand it isn't a panacea for everything, but it would be nice to hear about your experiences.

Thank you.

Sasha

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14 Replies
Sparklingsunshine profile image
Sparklingsunshine

I have Hypo but have never had raised antibodies although apparently 20% of Hashi's never do. I take LDN for Fibro and have done so for around 14 months. Its worked well for me, I find it improves mood, energy, focus etc.

I know its recommended for a wide variety of AI diseases, MS, rheumatoid arthritis and Hashi's. I would certainly suggest its worth a try.

sasha_nico profile image
sasha_nico in reply to Sparklingsunshine

Hi Sparklingsunshine, thank you for your reply. Very encouraging! Glad it works for you. I think I am going to try :-)

birkie profile image
birkie in reply to Sparklingsunshine

Can I just ask you sparkling sunshine how did you get LDN and what is it🤔 I've had fibro since 2005 and diagnosed with graves disease in 2019 (full thyroidectomy) I'm pretty sure I have some kind of auto immune problem especially in my bowles I also have colitis, I've never been offered anything for my fibro just anti depressants 😔

Sparklingsunshine profile image
Sparklingsunshine in reply to birkie

Its Low Dose Naltrexone, Dr Myhill is a fan, she often recommends it for ME, Naltrexone at full strength is used to help people addicted to drugs and alcohol, it works on the body's endorphin response, normally at 50mg.

However scientists discovered that in much lower doses it still has positive effects on endorphin levels and in addition can help regulate the immune system, useful for autoimmune conditions. Like you I've tried all the usual Fibro meds and couldn't tolerate them, so felt LDN was worth a shot.

I dont know how readily available it is on NHS, its an off label drug so very much down to the doctor's discretion. My GP wouldn't prescribe it, although happy to fill me with crap Fibro meds , so I get it on private prescription from Roseway Labs.

birkie profile image
birkie in reply to Sparklingsunshine

Interesting 🤔 I also have ME diagnosed alongside fibro, today my gp prescribed a antihistamine for my intolorences to T4, T3.. Does that really work, I would have thought not, I've tried the over counter antihistamines and they did nothing 🤷‍♀️

Sparklingsunshine profile image
Sparklingsunshine in reply to birkie

There are antihistamines and antihistamines. Fexofenadine is a newer generation of antihistamine that is considered more effective, with fewer side effects. You can buy it otc now as well. The older ones like Certrizine work in a different way. Fexofenadine can help with stomach related allergies, its worth a try.

birkie profile image
birkie in reply to Sparklingsunshine

Maby the gp ment for me to keep on the T4 along with trying the antihistamine 🤔 although she never actually said that🤷‍♀️ yeah I'll try taking the T4 with the antihistamine tablets can't be any worse than it already is👍

Sparklingsunshine profile image
Sparklingsunshine in reply to birkie

If you fancy some in depth weekend reading then try this website ldnresearchtrust.org/Lots of info on the latest LDN research, links and other interesting info.

I always say its worth a try. It might do nothing, it might do something or be the best thing you've ever tried. It seems to be one of those medications, but then that is true of any medication.

Pregablin, often prescribed for Fibro only has around a 40% rate of effectiveness. Not a glowing endorsement 😒

sasha_nico profile image
sasha_nico in reply to birkie

LDN Pharmacists

Find an LDN compounding pharmacy in your area.

ldnresearchtrust.org/ldn-ph...

[ Edited by admin to add a brief description of what will be found by follow the posted link. The guidelines require some sort of description or context for links so people have an idea where they will get to if they click on the link and why it has been suggested. ]

Marz profile image
Marz

At the bottom of this page or to the right (depending on device ) there are 10 more posts about LDN under the heading Related Posts. Hopefully something there to help.

FallingInReverse profile image
FallingInReverse in reply to Marz

sasha_nico in addition to related posts, searching “LDN” on health unlocked will give you many many posts to read. There’s some on the thyroid board but there is also an LDN-related board also.

It’s been on my research/explore list. My high level takeaways are that it definitely is worth considering for fibro or thyroid-related fatigue (and other stuff). That many have success, that some of that success doesn t last, and for some it doesn’t work at all.

But my assessment for myself is after I’ve exhausted some other things I will consider it.

AKatieD profile image
AKatieD

Taken it for years and it has slowly and steadily reduced my thyroid antibodies.

For me it has not been earth shattering or had much of an overt effect, but is probably worth it for the effect on the antibodies.

If you decide to start LDN remember to start very low and increase slowly to avoid problems.

sasha_nico profile image
sasha_nico in reply to AKatieD

Thank you, AKatieD. I think reducing antibodies is a great start as I assume that means there is no further damage to the organs. But I don't know if thyroid can regenerate and I will probably need to have thyroid meds for life., but with no further deterioration. 🤞

LucyYoga profile image
LucyYoga

Yes I’ve had amazing success- it brought my antibodies down from 1500 to 100 in 2 months when over a year on AIP and every lifestyle intervention imaginable wouldn’t budge them. Start low at1-1.5 ml and build up to 4.5 ml f you can tolerate it.

I’ve had no side effects from it and am on 4.5 ml. Check out the LDN research trust website- amazing success stories and information on it. Just make sure not to take an opioid medication like codeine etc or it will make you very sick !

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